Textbook of Interdisciplinary Pediatric Palliative Care E-Book , livre ebook

Textbook of Interdisciplinary Pediatric Palliative Care

Joanne Wolfe, MD, MPH
Division Chief, Pediatric Palliative Care Service, Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Director, Pediatric Palliative Care, Children’s Hospital Boston, Assistant Professor of Pediatrics, Harvard Medical School, Boston, Massachusetts

Pamela S. Hinds, PhD, RN, FAAN
Director, Department of Nursing Research and Quality Outcomes, Children’s National Medical Center, Professor of Pediatrics, The George Washington University, Washington, DC

Barbara M. Sourkes, PhD
John A. Kriewall and Elizabeth A. Haehl Director, Palliative Care Program, Lucile Packard Children’s Hospital at Stanford, Associate Professor of Pediatrics, Stanford University School of Medicine, Stanford, California
Saunders
Copyright

TEXTBOOK OF INTERDISCIPLINARY PEDIATRIC PALLIATIVE CARE
ISBN: 978-1-4377-0262-0
Copyright © 2011 by Saunders, an imprint of Elsevier Inc.
No part of this publication may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or any information storage and retrieval system, without permission in writing from the publisher. Details on how to seek permission, further information about the Publisher’s permissions policies and our arrangements with organizations such as the Copyright Clearance Center and the Copyright Licensing Agency can be found at our website: www.elsevier.com/permissions .
This book and the individual contributions contained in it are protected under copyright by the Publisher (other than as may be noted herein).

Notices
Knowledge and best practice in this field are constantly changing. As new research and experience broaden our understanding, changes in research methods, professional practices, or medical treatment may become necessary.
Practitioners and researchers must always rely on their own experience and knowledge in evaluating and using any information, methods, compounds, or experiments described herein. In using such information or methods they should be mindful of their own safety and the safety of others, including parties for whom they have a professional responsibility.
With respect to any drug or pharmaceutical products identified, readers are advised to check the most current information provided (i) on procedures featured or (ii) by the manufacturer of each product to be administered, to verify the recommended dose or formula, the method and duration of administration, and contraindications. It is the responsibility of practitioners, relying on their own experience and knowledge of their patients, to make diagnoses, to determine dosages and the best treatment for each individual patient, and to take all appropriate safety precautions.
To the fullest extent of the law, neither the Publisher nor the authors, contributors, or editors, assume any liability for any injury and/or damage to persons or property as a matter of products liability, negligence or otherwise, or from any use or operation of any methods, products, instructions, or ideas contained in the material herein.
Library of Congress Cataloging-in-Publication Data
Textbook of interdisciplinary pediatric palliative care/ [edited by] Joanne Wolfe, Pamela Hinds, Barbara Sourkes.
p. ; cm.
Includes bibliographical references and index.
ISBN 978-1-4377-0262-0 (hardcover : alk. paper) 1. Terminally ill children–Care. 2. Palliative treatment. I. Wolfe, Joanne. II. Hinds, Pamela S. III. Sourkes, Barbara M.
[DNLM: 1. Palliative Care. 2. Child. 3. Patient Care Team. 4. Professional-Family Relations. 5. Professional-Patient Relations. 6. Terminal Care. WB 310]
RJ249.T49 2011
362.17′5083–dc22
2010027305
Acquisitions Editor: Pamela Hetherington
Publishing Services Manager: Anne Altepeter
Team Manager: Radhika Pallamparthy
Project Managers: Cindy Thoms/Vijay Antony Raj Vincent
Senior Book Designer: Ellen Zanolle
Cover and frontispiece art: Evelyn Berde
Printed in China
Last digit is the print number: 9 8 7 6 5 4 3 2 1
Dedication
With love for Sam, Hannah, Ben, and Michael
JOANNE WOLFE
To Ron, Ben, and Adam Griffin for caring and believing, and to Wayne L. Furman, Linda L. Oakes, and Charles Pratt for having always known the essential nature of pediatric palliative care and research
PAMELA HINDS
For Talia Jade and Eric & David
BARBARA SOURKES
And to the colleagues from whom we have learned and the children and families for whom we have had the privilege to care
About the Artist
Evelyn Berde grew up in the old “West End” of Boston, a neighborhood of European, African-American, and Latin immigrants. Today, many of her images and colors reflect her passion for Native American, Southeast Asian, Latin American, and African art, but also, her paintings still somehow recall for her the world she lived in as a child in the West End. Evelyn brings much of her life experiences to each painting. Her work resembles the patchwork of her childhood and adult life, as an artist, mother, wife, and teacher. Evelyn incorporates her connection to people and their “stories,” her surroundings in everyday life, inspirations, and dreams. Evelyn’s artwork has been commissioned by Children’s Hospital Boston for the Anesthesia Department Library, the Children’s Hospital Chapel, and the patient family house at 241 Kent Street. In creating these works, Evelyn notes, “I try to talk with many patients, parents, and staff members before I create a piece of art. The colors, lights, textures, and lines of each painting hopefully reflect the thoughts and feelings of each person I have met.”
Contributors

Leslie Adams, MSW, PPC Consultant, CHPCC and former Pediatric Palliative Care Consultant, Seattle Children’s Hospital, Seattle, Washington

Justin N. Baker, MD, Assistant Member, Department of Pediatric Medicine, Division of Palliative and End-of-Life Care, St. Jude Children’s Research Hospital, Memphis, Tennessee

Charles B. Berde, MD, PhD, Division Chief, Pain Medicine, Senior Associate in Perioperative Anesthesia and Pain Medicine, Professor of Anaesthesia (Pediatrics), Harvard Medical School, Children’s Hospital Boston, Boston, Massachusetts

Myra Bluebond-Langner, PhD, Professor and True Colours Chair in Palliative Care for Children and Young People, Louis Dundas Centre for Children’s Palliative Care, University College London, Institute of Child Health in Partnership with Great Ormond Street Hospital, London, United Kingdom

Elizabeth D. Blume, MD, Associate Professor, Harvard Medical School, Medical Director, Heart Failure/Transplant Program, Children’s Hospital Boston, Boston, Massachusetts

Renee Boss, MD, Assistant Professor, Division of Neonatology, Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, Maryland

Kimberly A. Bower, MD, Medical Director, San Diego Hospice and Palliative Care, San Diego, California

Debra Boyer, MD, Pediatric Pulmonologist, Children’s Hospital, Boston, Massachusetts

Alberto Broniscer, MD, Associate Member, Department of Oncology, St. Jude Children’s Research Hospital, Memphis, Tennessee

Janie Brooks, M Div BCC, Staff Chaplain, The Children’s National Medical Center, Washington, DC

Michelle R. Brown, PhD, Clinical Associate Professor of Psychiatry, Division of Child Psychiatry, Stanford University School of Medicine, Lucile Packard Children’s Hospital at Stanford, Palo Alto, California

Susan Cadell, MSW PhD, Acting Dean, Faculty of Social Work, Wilfrid Laurier University, Kitchener, Ontario Canada

Naimah Campbell, RN, BSN, Nurse Clinician, Circle of Life Children’s Center, Inc., The University of Medicine and Dentistry of New Jersey (UMDNJ), New Jersey Medical School (NJMS), Newark, New Jersey

Jean Marie Carroll, RN, MSN, Program Manager, NeuroCardiac Care Program, The Cardiac Care Center at The Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania

Colette Case, MA, CCLS, CTRS, Director, Child and Family Life Services, Lucile Packard Children’s Hospital at Stanford, Palo Alto, California

Melanie Chan, Pharm.D., Pharmacy Operations Manager, Lucile Packard Children’s Hospital at Stanford, Palo Alto, California

Jody Chrastek, MSN RN, Pain and Palliative Care Coordinator, Children’s Hospitals and Clinics of Minnesota, Minneapolis, Minnesota

Harvey J. Cohen, MD, PhD, Deborah E. Addicott - John A. Kriewall and Elizabeth, A. Haehl Family Professor of Pediatrics, Stanford University, School of Medicine, Katie and Paul Dougherty Medical Director, Palliative Care Program, Lucile Packard Children’s Hospital at Stanford, Palo Alto, California

John J. Collins, MB BS, PhD, FFPMANZCA, FAChPM, FRACP, Head of Department, Pain Medicine and Palliative Care, The Children’s Hospital at Westmead, Sydney, Australia, Clinical Associate Professor, Discipline of Paediatrics and Child Health, Sydney Medical School, University of Sydney, Sydney, Australia

Nancy Contro, MSW, LCSW, Palliative Care Program, Lucile Packard Children’s Hospital at Stanford, Palo Alto, California

Betty Davies, RN, PhD, FAAN, Professor and Chair, Department of Family Health Care Nursing, University of California, San Francisco San Francisco, California

Dawn Davies, MD, FRCPC, Associate Professor, Department of Pediatrics, University of Alberta, Medical Director, Pediatric Palliative Care Program, Stollery Children’s Hospital, Edmonton, Alberta, Canada

Pedro A. De Alarcón, MD, William H. Albers Professor and Chair, Department of Pediatrics, University of Illinois College of Medicine at Peoria, Peoria, Illinois

Elisabeth Potts Dellon, MD, MPH, Assistant Professor, Department of Pediatrics, Division of Pulmonology, North Carolina Children’s Hospital, University of North Carolina School of Medicine, Chapel Hill, North Carolina

Deborah L. Dokken, MPA, Family Health Care Advocate, Former Associate Director, Initiative fo